The Odds Were Low.

Written by Mark ShaylerWellbeing

The last eight weeks have been tough. Not that you’d know. I’ve been like a swan. Graceful (ish) above the water, paddling like billio below. That’s the thing with our curated world, it’s hard to see through the Insta-perfect projections of life. From meeting me or glancing at social media it all looked like busy-ness as usual: bikes, workshops, trains and shoes. But deep down I’ve been super-stressed.

I got a letter about 10 weeks ago saying that as part of a random assessment of blood test results I had a marker in my blood for Pompe Disease. First thoughts: What the chuff is pompe disease? What blood test? I tackled the first one first.

Dr Google has no bedside manners. Pompe disease is a progressive weakening of the muscles. Primarily those responsible for breathing, walking and the arms. Cripes. The rush, the panic, the feeling sorry for myself hit me like a train.

The odds were low 40,000 : 1 — but still, I had a marker for it.

There was a number on the letter. I had to wait until 9.00 to call it. On the dot I did. “What blood test” I asked. Turns out I had a routine blood test in 2013 and because Pompe Disease is so rare a large screening programme was launched. Still…..

The odds were low. 40,000 : 1

But they weren’t. Of the couple of thousand screened two had confirmed Pompe. So the odds were now. 1,000 : 1 Still….

The odds were low.

Next steps was another blood test in two weeks. I had a lovely chat with the nurse. She was married to the research Dr conducting the study. Married for over 40 years. I’ve shit veins so it’s always a bit of a lucky dip finding one. How long would the test take to come back?

“Well, I don’t work Wednesday, Thursday or Friday so these won’t go off until next Monday then as there’s no rush I think the lab will get round to it in about a fortnight. There’s no rush”.

Good grief. This is urgent, there is a rush. This cuts to the heart of my self-worth.

I am physical. I played rugby at a really high level, I ran and jumped at county level, I love thai boxing, I love cycling.

Activity is my element. What the hell was I going to do if I couldn’t run, jump, box, cycle. I hadn’t got as far as thinking about not breathing unaided.

The odds now? The odds in my head were evens. I either had it or I didn’t. It was binary.

The odds (in my head) were high. Evens.

So I sat and waited. And waited. And waited. Part-way through the wait I had a trip to Lisbon. I didn’t want the kids opening the letter whilst my wife and I were away so I called the hospital. “Oh no, they’ve not got around to it yet. There’s no rush”.

No rush! No rush! I’m calculating odds as low as evens here. Every time I get a twinge, a flicking muscle; every time I feel tired or achy; I fear the worst. I reckon I could imagine myself into most diseases.

Lisbon came and went. I emailed. Twice. Nothing.

Then like the overdue drop in an irritating dance track, the letter plopped through the letter box. There was no sign of Pompe Disease.

I knew that. And I knew it all along.

The odds were 40,000 : 1


But why was I so het-up? Because (apart from falling off a cliff in a confined space like a barrel or clowns; ooh a barrel of clowns and me falling off a cliff — eek) this type of disease is my worst nightmare. We take being able to run, swim, move for granted. Some people can’t. I align my self-identity with my physicality. Some people can’t. Exercise is my safe space; it is where I go to think; it is where I go to meditate. Some people can’t.

This is a nothing story. Man thinks he may be ill. Has a few uncomfortable weeks waiting. Isn’t ill. The end.

But these kitchen-sink dramas teach us things. This one reminded me that life can be short. It reminded me that it can be long but restricted. It reminded me how fortunate I am. It reminded me what I love doing; what I am. It reminded me that the post doesn’t always bring bad news.

It reminded me to move as much as I can, whilst I can.

Written by
Mark Shayler
Eco-design and Environmental Stuff
Thinker. Doer. Creator. Speaker. Author. Mark Shayler helps big companies think small and small companies think big. Making stuff better and making better stuff. He runs an innovation and environmental consultancy called Ape, where he helps businesses to develop new products and services – and in the process, save them shed loads (technical term) of carbon and (to date) over £100 million. He's a public speaker (quite funny), trainer, a foundin...

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